Spasticity Clinic Team Meeting - October 18, 2016

Jon and I met with seven team members in the same room with Kevin to discuss how to improve his walking. Finally, a productive way to make a decision when many opinions are needed. A physiatrist, orthopedic, physical therapist, occupational therapist, psychologist, nurse, and the clinic coordinator. Everyone was in agreement that Kevin needs to have surgery on his left hip, foot, and ankle. Sigh. We knew this was coming. Gulp. We agree. Deep breath.

The team assured us that this is the right time to do the surgery. If the surgery had been done when Kevin was younger, he would have likely needed surgery again due to his physical growth. If we wait until he is much older, his recovery will be slower and more difficult. The X-ray shows that Kevin’s left hip is out of socket. This is the reason (or some of the reason) that he turns his left foot in when walking. It was explained to us that if his hip is not corrected Kevin will likely develop pain and arthritis. Once the hip is corrected, it is our understanding that it is unlikely the hip will slip out again. Some of Kevin’s other issues to be corrected by surgery: a very tight achilles heel tendon that needs lengthened (and some other muscles that attribute to pulling the foot in while walking); the arch in his left foot is very tight; a contracted big toe; and they also want to remove the pin that was placed in his left ankle in April 2014 - they said that this could be attributing to the further spasticity/contracture/tightness in the foot and ankle and they are concerned that possible debris from the pin could eventually cause further aggravation. They did make a few positive comments referring to Kevin’s spine and leg bones were straight. 

The information we have at this time is that this will be a long surgery. He will be non-weight bearing for a month. And he will require intense all day therapy for three months after the surgery. 

One of our big concerns is that even after the surgery, Kevin’s brain will continue to tell him to pull his foot in while walking. But we are told without surgery, the tendons will continue to shorten, the bones will become twisted, and arthritis will set in his hip and foot if it is not corrected. 

We do not have a surgery date yet. The next step is to meet with the orthopedic surgeon (the same doctor that we saw last December). It is unlikely that we will be able to schedule the surgery before the end of this year.